Mamazen

Communication Shutdown. Nov 1

One of the biggest challenges as a parent of a child with autism is communication. Watching her struggle to get her needs met, struggle to make sense of what is being asked of her, struggle to connect. Thankfully this past year, the work we've done and her growth through speech therapy has seen great strides in these areas. She's much more able to ask for what she wants, tell us what she doesn't want, and can even carry on some conversations. I know many autism families who don't have even that. 

Social communication is even more challenging for those on the spectrum. The back and forth of conversation can be overwhelming and intimidating. Social nuances and body language are sometimes completely foreign concepts. For many people on the spectrum social settings are cause for stress, anxiety and complete meltdown. I am thankful that Ruby is also making great strides in how she chooses to interact socially, and reaching out to communicate with friends and family. She is still far behind in learning how to initiate play with her peers, and many times, her frustration comes out in not so pretty ways, like throwing things, or pushing.

In this world we live in, social media and social communication are things that we can't seem to live without. Without the constancy of facebook, how would I know which friends we'll run into at the park, or how would I know I should pick up some milk for my best friend while I'm out at trader joes? What would it be like not to know what was going on with those you know, not to get it, not to feel connected? Can you disconnect from your social networks for one day?

I'm going to try and find out. Just a touch, just a taste, just one day. For this day, I will instead of finding out what you're doing every 45 minutes, I'll be checking in more deeply with my most beloved. I'll connect with her needs, her desires, her joys, her triumphs. Instead of posting pictures of what she's doing I'm just going to enjoy her. 

What about you?

day 05. Something I hope to do someday

*yes I'm on vacation. why am I blogging? well cause I got hit with some stomach bug, or motion sickness, or altitude sickness this afternoon while driving upcountry, and I need to distract myself from how yucky I feel.

When I first started thinking about this post I thought I'd write about how someday I hope to push a baby out of my vagina. (hows that for getting your attention?) I thought I'd write about how I yearned for another chance to have a home birth, feeling my baby slide out of me, into this world with little to no intervention. How I dream of pulling my newborn baby onto my chest and feeling them find their way to the breast. How the tide of emotion would rush over me, cracking my already wide open heart even bigger. 

But that's not what I want to write about. We're on vacation. In Maui. For a glorious, relaxing 17 days. We've been here a week and still have a whole vacation ahead of us. Surprisingly, this trip is eons more relaxing than the one we took last winter. Maybe it's because we know the lay of the land, maybe it's because our condo has two floors instead of one and allows for more space and quiet. Maybe it's because we have had a full year of being autism parents and know what we're doing a bit more and our awesome kid has had a year to mature and gain more language. Whatever it is, it's the best vacation ever (even with me feeling sick today). We haven't eaten out much, or really done anything exciting. Each day pretty much consists of beach time, food, more beach time, drawing, reading,and probably a video. Ruby's grandma (Ryan's mom) is here with us, so we've had a couple of nights out, and night time walks on the beach. 

The amazing thing is how Ruby has adapted to the new surroundings. She's a natural in the water, with almost no fear. She throws herself into the waves with wild abandon and can't seem to get enough time in the water and on the sand. Along with this increased bravery in the water, she's had a gigantic leap in language. Two weeks ago, when she wanted to hold your hand, she'd just shout "hand!" but now all of a sudden she'll say "gimme your hand" or "take my hand". Her use of pronouns has at least quadrupled. Her commenting on her surroundings, and recalling things we've done, places we've been and things she's seen. For parents of neurotypical 4 year olds, these things don't seem like a big deal, but for my kid hearing her say "I have to be careful so I don't fall down the stairs" is a HUGE. DEAL. 

It's no secret we love the beach. They say that you are beach people or mountain people. I have to say, that I'm both, but in my heart of hearts, I belong at the ocean. I spent 6 years living on the edge of it in San Diego, and was never happier than when my apartment was 2 blocks from the beauty of sand and salt and waves and sunsets. As much as I love living in the city of Portland, I  know that someday, my heart and my family belong on a warm tropical beach.  With a little encouragement ruby would be surfing by the time she's 6 and I have no doubt fully conversing. Ryan would snorkel and scuba dive regularly and swim at sunset with our blossoming child.  We are beach people for sure. 

Someday I hope to live a simple life by the ocean, in a place we can grow our own food year round, and where the sun meets the surf and the sand. My back door will open up to the fading sun and my heart will open to the sounds of the ocean. I'll bake sweet breads filled with tropical fruits and watch my children brown in the midday sun. I'll see the beauty and power of the ocean heal my daughters challenges and my own broken pieces. And, just like Celeste, I want to write a book about it. 

Guess we should start looking at real estate eh? 

 

52 months

My dear, amazing Ruby,

Today you are 52 months old, and quite frankly, I adore you. You amaze me with your brilliance, your beauty and your huge heart. You are something of a wonder these days, constantly filling my heart with love, my head with laughter and my arms with hugs. There is rarely a dull moment and NEVER a joyless day. 

So many choices sit before you lately

Sometimes, you make choices I probably wouldn't.

Sometimes you choose the perfect one. <3

Sometimes you sit down on the job, but still seem to be the cutest one around.

Sometimes, you completely blow me away. 

You're always seeing things I can't see,

and showing me where to look. 

 

You recently pedaled a trike for the first time. I was so overjoyed I cried! You're nervous to do it again, but I know once you realize you can, there will be no stopping you.

 

You also spent some time with your friend Otis and his brother Xander, who think the world of you. Otis even wrote you a song. 

You guys jumped and laughed and cried. It was a full afternoon.

You also had a rare quiet moment with your Faux Bro Shoghi, showing him how to get it done with markers. 

You had an ice cream social with Eleanor

 

And shared your swing, which ended up being a great time. You were so vocal: "your turn Eleanor!"

You've made great strides in so many areas. You're connecting more with the adults and children around you, even running off to play with an unexpected friend at the playground. Sometimes I'm completely astounded at the leaps you make in a day. Your receptive language has also taken another jump. You're much more able (and willing) to follow directions and stick with a plan. You are telling me you're all done with something before moving on and often helping clean up. 

 

You still love drawing. Lately your favorite thing to draw or color on is junk mail. It sure makes your daddy proud to see you recycle. You have an amazing ability to color ambidextrously. It's clear that you're left dominant, but you can color and draw with both hands with amazing dexterity. I truly think it's good brain stimulation, and it is certainly a zen activity for you. 

Tomorrow we're off on a grand adventure to Maui. Seventeen days in the surf and sand, sensory therapy galore! We'll go hiking and to a horse ranch and a goat farm. I have no doubt that the salt water and sea air will bring you great healing and growth strides, just like it did last year. Most of all, I'm grateful that even though autism is a challenge, it isn't stopping you from going on adventures. 

Ruby, I think you're rad. Let's go see the world! 

All my love, Mama

 

day 04. Something I have to forgive someone else for.

I don't tend to hold grudges. If you  wrong me more than once, I'm gone, and I rarely look back. It's not that I won't work through tough times with someone, clearly I've been married for 14 years, I know how to work to make a relationship work, but I also know that old adage: fool me once, shame on you, fool me twice, shame on me. G'bye, see ya later sucker. 

So, I thought long and hard about this topic and in the end I decided that it's about time I forgave you for your fertility. I forgive you for your ability to produce offspring at will, on your own timeline, without doctors and drugs and syringes. I forgive you for your robust ovaries and your fecund belly. I forgive you for your thoughtless comments about how you can 'get pregnant just by looking at your husband' and how it's such a 'curse to get pregnant easily'. I forgive you for asking me how much my baby cost. I forgive you for your insensitive questions, and your unsympathetic brushing off of my repeated failed cycles, saying "oh sorry, maybe next time!" not remembering that 'next time' requires thousands of dollars. I forgive you for telling me that it's the 'universe' telling me that maybe I should 'just adopt' or that my 'spirit babies' are waiting for the right moment.

I forgive you for your fertility. 

I forgive you for your ignorance. 

I forgive you for your insensitivity.

I forgive you for your thoughtlessness. 

I forgive you. 

But I still hate it. 

day 03. Something I have to forgive myself for.

There is a reason it took a few days to get to the next post. I've sat down multiple times to write this, and have come up empty handed every time. Oh it's not that I don't have things to forgive myself for, but which one?  I come from a long line of Catholics, and we do guilt very well. I'm also the third of four children, I was the blame taker and the peace maker. I don't have any problem blaming myself for something, ask my therapist.  (and see my previous post about worth and blame) 

Then, while reading Heather's post regarding this same topic, about how she should forgive herself for being unforgiving to herself, when I laughed out loud because I was just thinking "I need to forgive myself for being unable to forgive myself".  There is a reason we're friends, folks. 

But really, that also seems too vague and impossible. So I had to think... what do I really need to forgive myself for? Infertility? Autism? more infertility? How well my business is or isn't doing? how good dinner was or wasn't? Oh wait... this all goes back to the same ideas behind the worth and blame post. Good lord, I'm boring and cyclic, aren't I. 

There is one thing that has gnawed at me off and on for the past four years, that I truly need to forgive myself for. Ruby's birth. We had a planned home birth, that took an unexpected turn. My water broke, and for 2 days I only had contractions when I laid down to rest (yes, thats weird). I stayed close to home, walked, did acupuncture, homeopathy, did everything I could to move things along. Nothing, also very little sleep.  Finally, on day 3 I drank a castor oil milk shake and well, as they say 'the shit just got real' (in more ways than one). I went from contractions every 15 minutes that didn't really bother me to WHOPPERS every 3 minutes lasting well over a minute. We were in business! I labored in the tub for 10 hours, only getting out to go to the bathroom and to have the midwife check things out once (wherein she had to pull my cervix forward, and OH HOLY HELL THAT HURT).  Finally after 10 or so hours, I was complete and felt like pushing. I clearly remember my (wonderful) midwife saying "you won't have to push for long, this baby is LOW". Oh. such fateful words. Words I know she wishes she never said. 

I pushed. And pushed. And pushed. I pushed in the tub. I pushed on the ball. I pushed on the toilet. I pushed on the birth stool. I pushed on the bed. I pushed holding on to the stairwell. I pushed. For thirteen hours. Yeah, read that again. I pushed. For. Thirteen. Hours. 

It wasn't as hellacious as it sounds. I mean, truly the longest hour was the one between the time we decided to transfer and the time I got an epidural. I remember telling everyone that it hurt during those 13 hours, but I didn't feel PAIN and want it OVER, until I realized that I was doing all of that hard work and this baby wasn't coming out. There was no danger, no one was in peril. My blood pressure never went over 100/70 (until I got to the hospital) and Ruby's heart rate never faltered. She just got stuck, and I got tired. So tired. By the last hour, my contractions were every 10 minutes and I was so. so. so tired. That last hour, when our midwife had said "I think we need to talk about transfer", I pushed so hard, I screamed like an animal, the last thing I wanted was to transfer, because I knew that the second I walked out of my house, I was walking into a c-section. 

Forgiving myself for not succeeding at home birth is not the end of this story. Sure I need to forgive myself for that one, but there is something bigger, sadder, worse. My c-section was horrible. I wasn't remotely prepared for it. I wasn't prepared for the shaking, the violating feeling of having someone inside of my body. I wasn't prepare to be able to feel someone's forearm in my vagina pushing Ruby's very stuck head back up so they could pull her out. I was NOT prepared for the panic that rushed up from my gut and straight into my heart and head and completely threw me for a loop. Within seconds of her being born I was having the worst anxiety attack of my life. I couldn't breathe, I couldn't focus, I just wanted OUT. I was screaming, begging the anesthesiologist to get me OUT OF THERE. He kept peering over the curtain, telling me that I should probably just wait a few more minutes. 

Ryan brought Ruby over for me to meet her, and I couldn't. I couldn't breathe, I couldn't focus, I didn't have any idea what was going on, and I couldn't. I couldn't meet my daughter. I couldn't pull my shit together long enough to place my eyes on this child that I had yearned so desperately for. I couldn't. 

Finally, the anesthesiologist asked me if I'd like him to take the edge off. YES. PLEASE. I said, and then I woke up in the recovery room. There are pictures of my holding Ruby, smiling at her, peering at her little face. But I don't remember it. Those pictures fill me with such sadness, because they happened to someone else. I don't remember the first time I held my daughter. I was so disconnected from the anxiety and drugs that the only memory I have of holding my precious child for the first time, is in a picture. 

This is what I need to find forgiveness in my heart for. It's not going to happen today, but that's what therapy is for, right? 

 

day 02. Something I love about myself.

Just one? Not kidding. I really do love several things about myself. No, it's not my size 4 ass, or my amazing sense of humor (although those things are pretty awesome, and things I have absolutely no control over). It's my resilience. 

Resilient: 1. Able to withstand or recover quickly from difficult conditions

               2. Able to recoil or spring back into shape after bending, stretching, or being compressed

               3. Able to weather tribulation without cracking or breaking

Without cracking. I almost decided to ditch this post after adding that piece, but cracking and breaking are two very different things, no? I have many little cracks in my heart but it is not broken, no it is not remotely broken. 

Compared to many I know, I have had and continue to have an easy life. My parents are still married, so I grew up with positive marriage role models (tho their marriage is not perfect, neither is mine). I was not abused in any way as a child, tho there is much darkness surrounding many in my early years (but that is not my story to tell, and I will not tell it). I did well in school, with the support of my parents and friends, I was not bullied or teased (much) and was not a bully or a jerk. Everything I ever wanted to try, I succeeded at. I wasn't the best at anything, nor was I the worst. I went to college, did well, and chose a very fulfilling career that I'm able to work successfully part time so that I can enjoy my child. I married a man whom I'd known for 15 minutes and 15 years later we're still standing strong. My chosen partner not only has a job, but it's a good one and it provides nicely for our family and allows me to work part time. I married a man who had no solid father figure in his life as a child, yet strives to be an amazing father, and is quite frankly, more than amazing. 

Compared to many I know, I have an easy life. But, if you've been reading this blog for any length of time, you'll also know that compared to many I have walked a very difficult road. They say infertility destroys a good number of marriages, and I have seen that to be true. They also say that raising a special needs child can destroy a marriage, and I have also seen that to be true. We got both. And both of them were kicking my ASS last year (in the year that shall not be named). By the end of that year I had been bent, compressed and stretched almost beyond recognition. And I bounced back.  I had weathered pretty severe trials and tribulations, and I did not break. "Difficult conditions" puts it mildly, the pain, humiliation, sleep deprivation and exhaustion I endured. And every morning, I got up, I made coffee and did what needed to be done. Sure I cried, I screamed, I had anxiety, but I got up. every. damn. day. I did the work, and it was hard but I'm a stronger woman, mother and human for it. 

I get knocked down but I get up again, and sometimes, I'm the toughest girl I know. 

Day 01. Something I hate about myself.

Just one thing? I kid I kid. I am not that full of self hatred. I have just the right amount. Well, truthfully, I don't *hate* anything about myself. There are several traits I have that I dislike, or wish I could alter. Several things I am working on that I hope to shift, but nothing I truly *hate* about myself. There is one thing about myself which I have no control over, and which I would change in a heartbeat if I could. 

My skin. 

Yes I know a lot of women don't like the skin they are in, but truly... I mean my skin. I have eczema that at best is mildly under control and at worst making my life an itchy hell. I can count on one hand (that is probably red and itchy) the number of days I spend a year without discomfort. Currently I'd say 85% of my body is red, itchy and spotted. It's delightful.

Don't try to give me advice. Trust me, I've tried it. No really, I have. I know what not to eat, what to eat, what supplements may or may not help, blah blah blah. I've tried every natural remedy under the sun. I've also used multiple pharmaceuticals. Some things work, some don't. Some things help, some make things worse. 

At the end of every day, I really don't like the skin I'm in. My hands look old, my eyes look tired, and I spend a small fortune in lotion. I have to think about everything I eat, everything I touch and every activity. Can I wash the dishes without gloves? will pulling weeds irritate me?  If I scratch the spot that itches will it become a rash?  Yeah. it's pretty exhausting. 

I bet you thought I was going to post about hating infertility, or my incessant need to please others, or my horrific desire to give more than I can emotionally afford. Nope. Believe it or not, this trumps all. 

that is not this post

I'd like to tell you about how we did a simple IUI cycle and met ultimate success, how we went back to infertility 101 and kicked its ass.  But that is not this post. 

I'd like to expound on how my ovaries stepped up to the plate, had amazing follicles and perfect hormone levels and led to a brilliant pregnancy. But that is not this post.

I'd like to shout to the roof tops that my husbands sperm count was better than it's ever been, with amazing numbers and fantastic motility, and that those little buggers found my perfect eggs and made a baby omelette. But that is not this post. 

I'd like to be typing joyfully about how I'm drinking a huge glass of water so I don't barf, not a second glass of wine so I don't cry. But that is not this post. 

I'd like to tell you that I'm pregnant. But that is sadly, not remotely this post. 

I get knocked down, but I get up again. I may be down, but I'm not out. 

 

 

I think it's time for a change of subject. Why not the 30 days of truth? I'm leaving on vacation in 11 glorious days for 17 amazing, sun filled, love filled days in Maui, so I probably won't do it in 30 days... but it'll keep you busy. What about you? will you do 30 days of truth with me?

Worth and blame

Recently my therapist has completely blown m mind. One day she asked me "What if no one was to blame? what if you didn't have to be responsible for everything that went wrong? What if it's no one's fault?"

 

*blank stare*

 

Yeah, I don't know. I've mulled this over and over and over for two weeks, and still I've got nothing. 

 

Today she said to me, after I expounded on how happy my ovaries were making me, "what if you didn't define your self worth by how well your ovaries were doing?"

 

*blank stare*

 

What if I didn't define myself by how well my child was or wasn't doing? What if i didn't define my self by how good a friend I am?  what if I didn't define myself by how busy my practice is? what if I didn't define myself by how many things were done or not done today?

What if I just was, and was fabulous? What if I thought of myself in the same way I'm attempting to raise my child? that she is amazing and full of worth just by being?  

It's kind of mind blowing, isn't it? When I think about it, I do remember a time when I defined my self worth by just being ME. And then there was infertility. And apparently that did a number on me.  

 

What about you? What defines your self worth? What if it didn't?